This is a discussion on Brittle bone disease within the Parenting Special Needs Child forum, part of the MummySG Special Group category; He ain't heavy, he's my son Aug 14, 2014, The New Paper Talk to Mr Seah Hong Tiang and you ...
He ain't heavy, he's my son
Aug 14, 2014, The New Paper
Talk to Mr Seah Hong Tiang and you realise that every "D" in "daddy" stands for devotion. By 5.15am every work day, he is awake. As Daniel wakes up an hour later and props himself upright on the mattress in the living room of their five-room Toh Guan Road flat, Mr Seah, 66, helps him get ready for the day. He lifts Daniel, 24, carefully, carries him to the bathroom and helps him put on his tailor-made work shirt and pants. Daniel buttons up on his own.
At 7am, they leave for the Ernst & Young office at One Raffles Quay where Daniel works as a tax associate. Again, Mr Seah bends over and carries Daniel and slowly lowers him onto the motorised wheelchair, which he had earlier positioned outside their home. He then helps Daniel with his socks.
Daniel steers his wheelchair into the lift and to the carpark where his father again carries him to the reclined front-seat of his Volkswagen Touran seven-seater multi-purpose vehicle and buckles him up before setting off. Mr Seah is always extra careful in handling Daniel because he was born with brittle bone disease, or osteogenesis imperfecta, a rare congenital genetic condition that affects the body's production of collagen. Collagen is an important building block in many body tissues. As a result, Daniel is only 98cm tall and easily fits into clothing for children aged between six and eight years old. His feet are tiny and deformed.
He relies heavily on his father, who quit his taxi-driver job in 2011 to fully care for his son. Mr Seah is so used to lifting Daniel, who weighs 24kg, that he said it's "just like lifting a sack of rice".
"Heavy? Not at all," the easy-going man told The New Paper last Friday.
"It's easy. I dont't think much of it, I've carried him from the day he was born until now."
Brittle bone disease sufferers are usually small. Limb and spinal deformities affect their mobility and can cause pain. And because of the poor quality of their bones, sufferers are prone to deformity and fractures.
Orthopaedic surgeon Tan Ken Jin, 37, said the condition, which has no cure, is estimated to affect about five to 10 people 100,000 worldwide. Daniel has suffered at least 20 fractures, mostly as a result of falls. As a baby, any slight pressure while cradling him would easily leave him with a fractured bone. His mother, Madam Lee Chui Ha, 60, who works as a clerk in Mindef, would tirelessly bandage his limbs each time. He had steel rods inserted into his legs to straighten his limbs but had them removed when they started to poke through his skin. Mr Seah has to be mindful when wheeling him around.
When he was a taxi driver, he would rush to look after Daniel in school and to buy him lunch while working his 12-hour shifts. "It was hectic and I was forced to put the 'Change Shift' or 'On Call' sign at times to get to Daniel as soon as I could. I didn't trust his classmates because they were too young," he recalled. Mr Seah quit his job of over 30 years when Daniel got into Nanyang Technological University (NTU) as an Accountancy undergraduate. He realised that his son had to move frequently and needed full-time attention.
Mr Seah, whose highest qualification was PSLE, used to earn between $1,000 and $2,000 each month. "The word 'tired' has never crossed my mind," he said. "If you think of it, you will be tired. You just have to look ahead an carry on."
He became a familiar face at the university as he waited for Daniel to finish every lesson. Soon, Daniel's friends became his friends. When each class ended, he would carry Daniel to his wheelchair and to other lecture halls before driving him home. This went on for three years. Last month, he proudly and tearfully watched his son graduate.
Now that Daniel is employed, Mr Seah continues to remain close to Daniel, walking around the nearby Tiong Bahru neighbourhood until Daniel knocks off.
He then helps Daniel shower every evening. Mr Seah has never been saddened by Daniel's condition. "I believe that the more you hope, you only become hopeless. I accept what comes, dont't wish for too much and just face reality," said Mr Seah, who also has two married sons, aged 31 and 35.
The need to quit his job was something he and his wife embraced. "It never caused a rift between us. She knows that one of us has to care for Daniel while the other works," he said. His wife works seven hours a day, earning about $2,500 each month. Various health and education bursaries and subsidies that Daniel received helped the family to get by.
The only medical bill Daniel incurs now is from his twice-yearly doctor visits for kidney stones. The visits cost between $100 and $200. The kidney stones leave him with blood in his urine whenever he has a fever, which can occur at least four times a year. Even then, Mr Seah is adamant about caring for his son on his own.
"Sometimes, I think I'm alone. But everyone else has families to care for too. As long as I can take it, I will do it.," he said. "The most important thing is to have a never-say-die attitude, be independent and persevere."
Despite his age, Mr Seah still moves easily and is healthy. He counts his days of lifting Daniel as his regular exercise. But he says: "I worry, now that age is catching up with me and I dont't know how long I will live. "I tell my grandchildren that they have to care for Uncle once my wife and I are gone. For now, I just try my best for my son and not give up. Just never say die, ."
Rejected at first, but he didn't give up
His dad is his hero and his mum is his source of motivation.
To Daniel, mum and dad are two of the strongest people he knows. And from them, he learnt to never give up. He persevered and landed a job with audit firm Ernst & Young even before graduating from Nanyang Technological University. He has been working there for a month and earns $2,850. Ironically, the firm was one of the seven companies that rejected his internship application as part of his school curriculum last year.
The Asia Pacific Breweries Foundation Scholarship for Persons with Disabilities scholar and former beneficiary of the SPD (formerly Society for the Physically Disabled) Education Programme then sought an internship placement with accounting firm Edward Lee & Co. When he failed to hear from the companies, Daniel admitted to feeling dejected. "I did feel like it was unfair, that perhaps if I weren't disabled, I would have heard from them," he said.
For Daniel, one of the toughest challenges is the erroneous belief that people like him cannot function normally. "It hit me the most during the internship process, that they could have dismissed my applications without giving me the chance," he said. "Many might also think that we can't work at normal capacity or that they need to treat us differently and think of us as 'special'." Daniel is grateful for being given the opportunity to prove himself at Ernst & Young.
Partner and head of Human Capital at Ernst & Young in Singapore, Mr Grahame Wright, said Daniel went through the same interview process as other applicants. His disability was no issue. "His academic results, positive outlook, talent and drive show that he fits well in our team," he told The New Paper, describing Daniel as "bubbly". "He showed that he is capable and our job is to help him use his talent to be successful in his career." He added that there are other employees with various impairments. In Ernst & Young, handicap-friendly facilities like a washroom with sliding doors have made things easier for Daniel.
Minor adjustments were made to help him. For example, his desk, near the door, has been positioned to allow easy access. Every day, the tea lady fills a kettle on his desk so that he does not have to move to get water. His colleagues are also mindful of his condition and offer to buy lunch every day so that they can eat together in the pantry or Daniel can eat at his desk. Otherwise, they make sure that lunch spots are wheelchair and handicap-friendly.
Mr Wright, 44, said the staff went through a training session to help them understand and better interact with the disabled. Daniel hopes that working will teach him a sense of independence. He wants to be less reliant on his parents. "I so feel sad that I need to depend on them for my most basic needs. But I know if I try to deal on my own beyond my capability, it will break their hearts should anything happen to me," he said. "I can only try my best to be independent and remain optimistic. Every challenge can be overcome if we believe." Looking into the future, Daniel is also resigned to the fact that he might never find a life partner. He said: "I dont't wish for too much when it comes to finding a girlfriend. I think it is unlikely that a girl will be accepting of my condition and I am okay with that.
"I am already a liability to my parents, I dont't want to be a liability to my wife. Let fate decide."
Prof: He didn't need special treatment
Daniel's pride and eagerness to learn struck a chord with his professor in university.
"While most students are comfortable with keeping quiet at the back of the class, he was quite vocal and asked questions," said Prof Sia Siew Kien, 49, an associate professor at the Nanyang Business School. He taught Daniel Accounting Information Systems in his second year.
On a personal level, he was surprised at how easily Daniel interacted with others. "He has a sense of humour and mixes around easily. I thought he would be less inclined to socialise, but I was wrong," he said. Prof Sia also spoke fondly of Daniel's father. "He would leave copies of the newspaper under our office doors or chat with us when he saw us. "I'm touched by his dedication to his son. I have never seen a father like him before," he said. Prof Sia said he had never needed to give Daniel special treatment. "He never asked for it. Daniel is independent and acts in such a way that you wouldn't think of him as different - he's just like everybody else," he said.
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